Bryce’s first
day back at Physical Therapy was Tuesday, January 14th, which was
also his 8-month birthday! He did great
and his therapist was very happy with how he looked and how strong he is. He still has a slight tilt but it’s only
noticeable when he gets tired. His
flexibility continues to improve but he still doesn’t have as much mobility
looking to his right as he does to his left.
Overall, he’s doing so well and we’re very pleased. We are now on a bi-weekly schedule instead of
weekly like in the past.
Thursday we had
his follow up appointment with Dr. Myseros.
The nurse asked us several questions about how he’s healing, how he’s
adjusting to the helmet, and what type of things Bryce is doing. She saw him clap his hands, smile, say
“dada”, and blow bubbles with his lips.
She was very impressed with all his skills and of course his charming
smile! She also measured his head, and
no surprise here…HUGE! Just like his
sister and every other Detwiler. He’s in
the 96th percentile. (Lots of brains,
obviously.) Dr. Myseros came in and made
a few comments about how well and symmetrical Bryce looked. With Bryce in my lap Dr. Myseros felt around
his head and said, “He looks great.” We
continued to talk about Bryce’s head circumference and his jump from the 34th
percentile before surgery to the 96th after he told us Bryce
was on track, no motor or cognitive delays (thank goodness!), and that he would
like to see us again in 6 months. He
will continue to see Bryce for several years to make sure his head is growing
properly, that his suture doesn’t fuse prematurely (again), and that his
neurological development is on track.
The next day we
had another appointment with Dr. Rogers in Rockville. He too was happy with how well Bryce was
doing. At all of his appointments and PT we take his helmet off and same drill
with Dr. Rogers. We told him his scar
concerned us a bit and he explained to us that it would be pink for some time
and not to be alarmed. We also asked if
the helmet would make his scar worse and he said no. We told him how the helmet was shifting and
moving around when we laid him down and he wasn’t happy about that. We talked about the fit of the helmet and
whether or not it was safe to touch the left side of his forehead where
everything has been reconstructed. Dr.
Rogers was pretty adamant that he didn’t want the helmet shifting and that it
needed to be adjusted ASAP. He wanted the helmet to hold with slight pressure
the right side of his forehead and hold less on the left (reconstructed) side. He said we no longer had to worry about him
sleeping on his stomach, face down and that Bryce was healed enough that the
helmet pressure sleeping face down wouldn’t damage his perfectly reconstructed
forehead. Dr. Rogers said his face and
eyes will continue to change over time and that his swelling is mostly gone.
Before we left
Rockville we called Star Cranial in Columbia to see if we could be squeezed in
and luckily, once again, they saw us. We
got there around 11 and were there until 1:30.
The appointments are SO long and this one was extra long because Bryce
barely napped and we had Kaylin with us. They put extra padding in the front of the
helmet and it fits much better now. It takes
time and lots of patience but I think now that his forehead is more stable and
Dr. Rogers gave the OK for the helmet to hold his forehead things will be a
little smoother now…fingers crossed. We
go back on the 27th for a follow up.
Since Friday night Bryce is in
the helmet for about 23 hours a day. We
give him a short break in the morning, sometimes one in the afternoon and take
it off every evening for his bath. Right
before his last bottle we put it back on and he sleeps in it. Surprisingly he’s been sleeping pretty
well. We have good nights and bad ones
but overall he’s doing great!
Last week was
one appointment after another and now we get a week break! J Each day gets easier
and we’re already seeing an improvement in his head shape. Again I never thought we would be where we
are today with his recovery. He’s healed beautifully and it’s such a blessing.
Yes, there are definitely challenges and some sleepless nights but
overall he’s such a trooper and we couldn’t be more grateful. We’re extremely lucky that he’s so tough and
just the happiest little big boy!
Pics taken January10th, exactly one month since his surgery.
Unbelievable how well he's healed!
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